Care oncology

[Leni22]

Hi I have stage 4 lung cancer and today have just found out that they are going to stop my immunotherapy as I have had to many side effects anyway my choices are to go back on chemo for a bit or I might be able to go a clinical trial. I've heard and read up a bit care oncology has anyone on here had any dealing with them

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Leni22

Sorry to hear you had to stop your Immunotherapy and can appreciate you are having to look at other treatments that may be available for you.

All evidence based treatments, through rigorous research, is what is licensed for use in the UK, including the safety of the drug which has been observed and carefully monitored, the exception of this would be clinical trials.

Care Oncology is a private run clinic in London, and on their website, they state they use a protocol of a combination of drugs which hope to target the altered metabolism of the cancer cell.

It would be advisable to continue to do your research carefully and hope you hear from others in the forum who may have had experience of this.

If you would like to discuss anything you can call us on our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email ask the nurse at [e-mail]

Kind regards

The Roy Castle Support Team

[Cockailschemocancer]

Hi Leni

I also had to stop my immunotherapy after 8 rounds due to ulcerated colitis. I was put on a watch and wait regime that was 3 years ago and last results I continue to be stable. I also am friends with a couple of other ladies who are the same. So whilst it’s scary to stop the thing that’s meant to fix you, it can still be a positive thing. I did a podcast with Roy Castle about it. Series 2 episode 2 which might put your mind at rest a little.

That said I also has another friend who did use CO for stage 4 bowel cancer and the protocol worked for her she feels in combination with chemo and surgery.

We are all very different, but I would say don’t panic or try not too! I keep a list of all the potential treatments for when I need it. Where my OC said no to something when I was on active treatment - she said yes when I wasn’t … . I really would discuss with them before doing anything as sometimes it can interfere with what you are having!

Wishing you all the best.

Kerrie

[sassassas]

Hi Leni22

I'm sorry to hear you've struggled with the side effects of IO.

My husband and I considered him using the Care Oncology protocol back when he was 1st diagnosed (Stage 4 NSCLC in March '21). He's doing really well on immunotherapy but at the time, we had been given a very poor prognosis so we were desperate for a miracle and COC seemed like it might be it - "proper" oncologists and drugs that are licensed albeit for other diseases.

I read quite a lot about it and also contacted the clinic directly for some data. The short answer was that they didn't have any trial data that they were going to publish (even though they suggested they were working towards it).

I think that if they really believed in their science, they would stand by it and publish some papers for other scientists to review. If they won't do this, it suggests they haven't had results that stand up to scrutiny.

So long answer, but I'd think very carefully about spending your money there.

I hope that helps, Sarah x

[Leni22 in reply to sassassas]

Thanks Sarah Yes its a hard one there isn't many reviews to form a proper opinion I won't rush into anything just looking for feedback from honest people xx